Effects on Lifestyle

Coping with a lymphangioleiomyomatosis (LAM) diagnosis can be difficult as the disease progresses. It can affect many aspects of your life, including:

• Your ability to get around and breathe on your own
• Independence as you may become increasingly reliant on others for help
• Plans to get pregnant
• Ability to travel certain places
• Intimacy with your partner

Overall, it is important to adopt a healthy lifestyle, which includes eating a healthy diet, being as physically active as possible (and as advised by your doctor), getting plenty of rest and not smoking.

Daily Routine
During the early stages of LAM, you will most likely be able to go about your daily activities - going to work, running errands and exercising.  As the disease progresses, your ability to get around may be limited and your health care provider may prescribe supplemental oxygen therapy to help you breathe more freely.

Pregnancy and LAM
Ongoing medical care from your primary care provider and a pulmonologist (preferably one who specializes in LAM) is essential. Because the disease primarily affects women, doctors believe that the hormone estrogen may play a role in causing LAM. If you are thinking about getting pregnant or starting oral contraceptives (birth control pills), be sure to talk with your doctor first. Many doctors believe that pregnancy may accelerate the progression of LAM.

Air Travel and LAM
We all need to get away once and while. However, it is important that you check with your health care provider before traveling by airplane or to places with high altitude or to remote areas where medical care may not be readily available. Some LAM patients have been advised to avoid air travel, because of the theoretical risk of lung cyst rupture associated with atmospheric pressure changes during flight. In a questionnaire study of 276 patients who had taken 454 flights, Pollock-Bar Ziv et al found that air travel is generally well-tolerated by most patients with LAM. Symptoms of anxiety, chest pain, shortness of breath, cyanosis or hemoptysis occurred in 10-20% of flights. Pneumothorax occurred in 10 flights, including eight episodes that were radiographically documented, but in five cases symptoms suggestive of pneumothorax were present prior to boarding. There have been no air travel-associated incidents requiring hospitalization among the over 500 LAM patients who have participated in the decade-long LAM Protocol at the National Heart, Lung, and Blood Institute (NHLBI). Most patients traveled every six months to the NHLBI to participate in this study, but air travel was not recommended to all LAM patients. 

Join a LAM support group or read inspiring stories from other women living with LAM. Their words may provide you with comfort and strength.

Learn more about the symptoms, cause and treatment of LAM.

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